Month: June 2017

Today I write about a member of our support group Overcoming Psoriasis. He joined our group right after he lost his young and beautiful mom, Deborah. He was at the veterinarian attending to his beloved dying dog when he got the call about his mom dying from cancer unexpectedly. He lost both his mom and dog within two days of each other. Tyson W. Poole told me, “This caused my psoriasis to flare.” It was then he decided to do some research on the internet. His search about psoriasis resulted with him finding our support group.

I also experienced this when I lost my father a few years ago. I will never get over the loss of my dad and I miss him dearly. Unfortunately I also lost a dog about a year ago. I can relate to the pain and the stress that Tyson experienced. Psoriasis can be triggered by situations like these. I’ve read many stories about people in similar situations that experienced a bad flare during stressful and emotional situations.

Tyson is 35 years of age and lives in North Carolina. His psoriasis started at the age of 22. His disease primarily affects his hands, feet, scalp, ears, and right arm. I asked him if any of his family members had psoriasis? He replied, “Nobody in my immediate family and none of my aunts or uncles has psoriasis.” He does however have a cousin who was covered with psoriasis. According to reseach, a person has to be predisposed in order to manifest the disease. It is believed that psoriasis will only present itself if you have an inherited gene. It’s possible to go through life with these genes never being triggered. Scientists are still trying to figure out how to turn this expression of the gene or genes off. If you want to learn more about the exact science, I suggest you explore the resources at the National Psoriasis Foundation.

100% cleared using Stelara by Janssen. Never give up!

Tyson was a forklift operator at a lumber yard and a huge fan of NASCAR. Like most people who develop severe psoriasis, it affects every aspect of your life including your career. Tyson tried many treatments in order to gain control of his disease. He used countless topicals ointments and creams. He also failed a well known biological medication that is a TNF inhibitor. He was then prescribed an oral medication that wasn’t successful. Tyson’s psoriasis was very stubborn. Using the advice from our members he never gave up. His doctor was wasn’t up to speed on the latest treatments and was hours from his home.

Tyson needed a more convenient doctor who was knowledgeable about our disease. Fortunately he found a doctor that cared and found a treatment that worked. His doctor prescribed him Stelara. However, it wasn’t until the third shot of Stelara that completely cleared his disease. He felt it working after the second shot and noticed slight changes with his plaques. These injections are taken every 90 days so it’s important not to lose hope with a particular treatment.

Tyson’s experience with our disease had a negative impact on his life. People treated him differently. Tyson said people wouldn’t want to associate themselves with him. Tyson often felt humiliated in public referred to our disease as a living nightmare. He eventually lost his self-confidence and isolated himself from society. Even family members disassociated themselves from him. Because our disease is visible and unsightly, many people have the misconception that it’s contagious. Psoriasis is not contagious. Most people don’t realize that psoriasis is a serious autoimmune disease and that the commorbitities can have grave consequences. It got to a point where Tyson couldn’t walk or handle things due to the pain. His life became unbearable.

Because of Stelara, Tyson regained his quality of life. The medication works by blocking the pathways of IL-12 and IL-23. Tyson is a big fan of Nascar’s Kyle Busch. Tyson now feels comfortable in his own skin and feels that he can conquer the world. With his new lease on life he hopes to one day meet and shake hands with Kyle Busch. Tyson lives 20 minutes from the maintenance shop of Kyle’s car and visits there often. He is considered a regular and views the cars being worked on as a spectacular behind the viewing glass. I hope and pray Tyson gets to meet Kyle in person so his dream will come true. Tyson is an inspiration to us all in the psoriasis community.

These medications are not cures and are temporary at best. There is no “one size fits all,” so more research is needed in order to develop a cure. When I was first diagnosed over 25 years ago none of these medications existed. Scientists need research funds in order to unlock the code of this insidious disease. That’s why I volunteer for the National Psoriasis Foundation. As an ambassador, it is my job to raise awareness and to help educate others about this misunderstood disease. Many people don’t know that psoriasis affects the joints, tendons, ligaments, and organs. Inflammation throughout the body causes so many other ailments. I believe we are so close to finding a cure. Please consider joining me and the NPF and let’s eradicate this disease forever. Let’s spare future generations from the embarrassing effects of psoriatic disease. Sponsor team Overcoming Psoriasis for our walks and cycling events through the NPF. The NPF is an accredited organization voted by Consumer Reports.

NPF #FlauntYourFlares Instagram Campaign: NPF will be launching an Instagram hashtag campaign to coincide with the first day of summer, Tuesday June 20th. The campaign is called #FlauntYourFlares and is designed to encourage people with psoriasis to not let a flare stop them from enjoying a healthy, active lifestyle. We want people to know that though they are treating their psoriasis with medication flares are a reality of psoriasis and can happen at any time. We are asking people to post a photo of themselves during a flare on Instagram and to include an inspirational quote and the hashtag #FlauntYourFlares. Throughout the summer, NPF will highlight one winner a week via NPF social media channels and a second winner will be selected to receive a summer healthy lifestyle kit.

The National Psoriasis Foundation will also be celebrating their volunteers at the National Volunteer Conference in Chicago on August 3rd to 5th. This will also fill up so order your tickets here. We use the hash tag #NPFNVC2017

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Go “BIG” or go home. Well it doesn’t get bigger than the grand ballroom at the Plaza hotel in NYC. Once again the National Psoriasis Foundation leveled up their (our) fight against psoriasis and psoriatic arthritis. Last night over 400 guests pack into the Plaza. These guests were from all over the country. We gathered to honor Dr. Gerald Krueger and Mr. Dale White.

I wanted to share with you my experience, but first let me introduce our honorees. Dr. Krueger is a Professor of Dermatology, Benning Presidential Endowed Chair University of Utah School of Medicine – Dermatology Former Chair and Chair Emeritus, NPF Medical Advisory Board Member, NPF Research Committee Member, NPF Scientific Advisory Committee. Honored as the most influential physician. After hearing him speak last night I can see why.

My role amongst several other outstanding volunteers was to greet and seat the guests as they arrived. As people enter the reception and registration area they were greeted with drinks and appetizers. The rooms were magnificently decorated with gorgeous flowers and wall coverings. All attending were dressed to the nines. It looked and felt like a red carpet celebration. The only thing missing was Access Hollywood asking people who designed their wardrobes.

The NPF is celebrating its 50th year driving, discovering, and creating a community that is patient driven. We have a common goal and that is to end this insidious disease through research. Our 50th Celebration Gala Chairs for the evening were Carol Ostrow and Michael Graff. Two of the warmest people you will ever want to meet. They are always so generous with their time and money. They are caring and loving. We need more people like Carol and Mike in the world.

The night started off with a speech from the NPF Board of Directors Chair, Colby Evans, M.D. He touched upon the last 50 years and how we look to a future free of psoriatic disease. He thanked our long list of Honorary Executive Committee members including; Randy Beranek, Dr. Colby Evans, Dan Farrington, Jodi and William Felton, Dr. Krueger, Mike Laub, Dr. Liu, Carol Ostrow, Pete Reading, Richard Seiden, Terri Theisen, Karen and Dale White.

We had some great entertainment from the cast of Kevin Can’t Wait. Christopher Brian Roach, and Lenny Venito. They served as our Emcees for the evening. I was fortunate to catch this on video.

Then we proceeded with the live auction where our audience members were most generous. The Auctioneer was Mark Schenfeld. He did a marvelous job raising funds for our cause.

Kathleen Gallant, MPA, spoke about her struggle with pso/psa since the age of 12. She formed a support group and was on the board for the NPF. She is now on the board of the International Federation of Psoriasis. Her story is unique yet similar and she speaks from the heart. She goes on to say; “I will never say Psoriasis is a blessing”. However she embraces the friends and relationships our community has afforded. I have to agree with Kathleen in that regard.

The night ended with videos and speeches form our Honorees. Coffee and dessert was served and we wrapped the night up with over 2.2 million dollars raised. This night was a huge success and I was happy to be invited to serve as a volunteer. Things ran extremely smooth thanks to our CDM Kimberly Schleyer.

On a personal note I wanted to thank all those who volunteered their time and participate in this 50th year Gala Celebration. We are making history and our efforts will curb the suffering for future generations.

I would also like to thank Healthline.com for voting this best blog of 2017.

This Event was sold out and it took place at the Plaza Hotel in NYC on Thursday June 8th. Hash tag #NPF50th

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The National Psoriasis Foundation will also be celebrating their volunteers at the National Volunteer Conference in Chicago on August 3rd to 5th. I am proud to say I am a finalist for OUTSTANDING VOLUNTEER. This will also fill up so order your tickets here. We use the hash tag #NPFNVC2017

This month:

NPF #FlauntYourFlares Instagram Campaign: NPF will be launching an Instagram hashtag campaign to coincide with the first day of summer, Tuesday June 20th. The campaigned is called #FlauntYourFlares and is designed to encourage people with psoriasis to not let a flare stop them from enjoying a healthy, active lifestyle. We want people to know that though they are treating their psoriasis with medication flares are a reality of psoriasis and can happen at any time. We are asking people to post a photo of themselves during a flare on Instagram and to include an inspirational quote and the hashtag #FlauntYourFlares. Throughout the summer, NPF will highlight one winner a week via NPF social media channels and a second winner will be selected to receive a summer healthy lifestyle kit.

Men’s Health Week Begins June 12th: In honor Men’s Health Month (June), NPF will share stories of men living with psoriatic disease to inspire men to talk more openly about the disease and to contact the Patient Navigation Center for help finding specialists, getting support and taking charge of their health.Stories will be shared via the NPF Blog and Advance and social channels. Additionally we will be hosting a specialFacebook Live event onThursday, June 15th at 12pm Eastern / 9am Pacific. During this event, NPF will talk with NPF volunteer Chris Pettit about fatherhood and psoriatic disease. In honor of Men’s Health Month, Chris will share his story about living with psoriasis – from adolescence to parenthood. RSVP for this event at https://business.facebook.com/events/1397886496926495/

#psoriasisinsidestory

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June 2017 was the 22nd annual Greenwich Concours! Recognized as one of the most prestigious concours in the country, Greenwich is unique for the fact it has two concours in two days consecutively. Saturday June 3rd was the Concours Americana and Sunday June 4th was Concours International. I was delighted to be invited by my friend Bobby Daddino who owns a 1983 Lamborghini Countach.

If you are a car enthusiast you’re gonna want to put this on your calendar for next year’s concours. Saturday’s line up included supercars of both American and foreign. Bobby and his “blackbull” Lambo was stage in this circle of gems. Parked right next to us was a “one-off” P 4/5 Ferrari designed and own by James Glickenhaus. Director and producer of the movie exterminator. I actually had a chance to interview this brilliant man. Among the cars in the circle were a Pangani, Lamborghini, Ford GT, LaFerrari, Lotus, and Porsche. Three awards were given in this circle of historic automobiles. I’m happy to say the “poster” child of super cars won best in class, B. Daddino’s Lambo. The P 4/5 and LaFerrari also received this honorable concours award.

I wanted to share with you my gallery of photos that I took with my Samsung Galaxy Note 4. I hope these pictures can give you a flavor of the event. Enjoy!